The Accelerated Cure Project (ACP) is dedicated to driving innovation in MS research through a collaborative, people-centered approach. Our work is anchored by three key pillars – the ACP Repository, a one-of-a-kind resource for MS biosamples; iConquerMS, a research network powered by the MS community; and our inclusive engagement initiatives that foster diverse participation in research. Join us as we highlight the progress of each initiative and celebrate key achievements that showcase the strength of our unique approach to accelerating MS research.
ACP Repository
The ACP Repository collection offers key insights into the underlying causes and mechanisms of MS, paving the way for breakthroughs in understanding this complex disease. This invaluable resource provides researchers with rapid, low-cost access to thousands of biosamples, along with detailed phenotypic (physical traits), clinical, and sample analysis data. With the barrier of sample and data acquisition removed, investigators can concentrate their efforts and resources on conducting research and exploring new theories.
The ACP Repository contains blood samples from over 3,200 participants with MS, other demyelinating diseases, and healthy controls. Each sample is accompanied by about 50 pages of self-reported personal, health, and clinical information, collected on a questionnaire, or case report form (CRF). In addition to the samples and data available from the baseline visit, approximately 460 participants provided samples and data at a second visit for longitudinal study (study over time).
The Repository is an open-access resource, meaning that samples and data are available to all researchers regardless of institution or location. Our main requirement for using the biospecimens is that any new findings from these research studies must be returned to the Repository Database to benefit future researchers. As we distribute Repository samples globally and receive findings back, the database grows. When the same samples are studied by multiple teams, overlapping datasets with different types of information are created. These datasets enable “virtual collaborations,” where researchers can use others’ results to inform their own work or conduct additional analyses. This feature makes the ACP Repository an essential resource for MS research. By cataloging and integrating these datasets, ACP aims to inspire new collaborations and drive advancements in MS research.
Breaking New Ground
ACP is working with DNAnexus to consolidate all of the Repository, CRF and returned data into a single platform. This will allow us to share and study the data together with the research community. Our goal is to create an interactive and searchable community portal that provides valuable information about Repository projects and resources for MS research.
Using samples from the ACP Repository, Octave Bioscience identified 20 proteins linked to increased MS disease activity. Some of these proteins are included in Octave’s Multiple Sclerosis Disease Activity (MSDA) test. Data presented at the 2024 ECTRIMS Congress indicate that the MSDA test is a key tool for measuring disease activity and treatment effectiveness.
“By providing a more comprehensive picture of disease activity, Octave’s Precision Care solution and its MSDA test can empower those living with MS and their healthcare providers to make more informed decisions about their care. We are thrilled that our Repository samples and data have enabled this research.” – Sara Loud
iConquerMS
iConquerMS is a patient-powered research network that brings together people impacted by MS – including patients, caregivers, researchers, clinicians, and advocates – to advance our understanding of the disease and discover new treatments. This unique online platform empowers individuals affected by MS to actively shape research, driving new insights and solutions through their collective experiences.
With over 8,500 members, iConquerMS fosters a community where patients play a leading role in the research process, from identifying research questions to sharing results. This people-powered approach ensures that research focuses on the real needs of those living with MS, leading to safer, more effective treatments that better reflect patient priorities.
iConquerMS serves as a bridge between the MS and research communities. Network members can privately share their experiences and medical records through an online portal. Researchers then analyze these data to uncover hidden patterns, helping them understand the causes of MS, predict who will benefit most from treatments, and discover new therapies.
The network features three key initiatives:
- iConquerMS: A platform for adults with MS to contribute their health data and lived experiences to speed up MS research.
- iConquerMS Kids & Teens: Supporting pediatric MS research by involving young patients and their families.
- iConquerMS Caregivers: Engaging caregivers as research partners to enhance research on their needs and those of the individuals they support.
Through the “Our Questions Have Power” program, iConquerMS members can suggest, discuss, and prioritize research topics they believe are important. This initiative ensures that research is focused on areas of significant interest to the MS community. High-priority questions identified by the community are then explored in collaboration with researchers, with iConquerMS offering support. Once a study is conducted, its results are shared broadly, making the research process inclusive and directly responsive to the needs and interests of those living with MS.
iConquerMS makes it easy to access and understand MS research results. On the Research Projects page, you can find updates and summaries from studies that network members have contributed to. The Chat with Chat webinar series introduces researchers working with iConquerMS, exploring their work and how it helps people with MS. We’re excited to team up with RealTalk MS, a weekly podcast that covers cutting-edge MS research and other important topics. The ACP newsletter is a way to learn about new MS research discoveries and more!
At the heart of iConquerMS is an innovative approach to research, one that places the power in the hands of those most affected by MS – the participants themselves. By contributing to research that’s not just about them but guided by them, members have a unique opportunity to shape the future of MS care and treatment. This participant-driven approach is making strides in understanding MS, pushing boundaries, and uncovering new insights that could lead to breakthroughs in how the disease is managed, treated and, one day, cured.
Success in Motion
People affected by MS often find research findings hard to access and understand. To address this, iConquerMS has introduced a dedicated research projects page on its website, providing a centralized hub for this information. Additionally, we’re enhancing communication through various channels, such as infographics, podcasts, and social media, to make these insights more accessible.
iConquerMS is launching CAFE-MS to study a new therapy to treat MS fatigue! Fatigue impacts about 70% of people with MS, making daily life difficult. While medications show mixed results, non-drug methods may help. This clinical trial will include 2,000 participants and seek FDA approval for an online treatment for MS fatigue.
“When it comes to what life with MS is like, I’m an expert. Together we can all get onboard and pull our expertise together… All aboard, not just some, not just a few, but all of us aboard on this journey towards getting treatments approved that are going to improve our lives.” – Laura Kolaczkowski
Inclusive Research Engagement
People affected by MS, from minority populations, are significantly underrepresented in MS research. To improve care and outcomes for all with MS, studies must reflect the full diversity of the population and promote inclusive participation.
When research studies lack diversity, in areas of race, ethnicity, sexual orientation, socio-economic standing, abilities, and in other dimensions, the evidence generated is not applicable to all.
Including minorities in clinical trials is key to ensuring new treatments work for everyone. At ACP, we are focused on breaking down the barriers to participation for people with MS from marginalized communities and helping others in MS research and care do the same.
ACP’s inclusive engagement initiatives reflect our commitment to working together and including the ideas and experiences of a wide range of people. Our resources include:
- The MS Minority Research Engagement Partnership Network (MREPN) is a diverse group of people and organizations working together to identify and fix the issues that keep people from participating in MS research. The group includes people from minority groups, businesses, researchers, healthcare providers, and more.
- The Research Inclusion Diversity and Equity (RIDE) Council is a group of about 30 people with MS from underrepresented communities. They use their experiences to help develop and conduct initiatives that bring more diversity to MS research. By amplifying the voices of traditionally underrepresented groups, the Council aims to broaden participation in research.
The RIDE Council provides key support to all stakeholders in MS research
People with MS have a dedicated group making sure they are included in clinical trials
Researchers have a resource to help them achieve diversity goals in their studies.
Organizations have tools to include and support groups that have been left out in the past.
On The Winning Track
The RIDE Council won the Jury Special Award at the Made With Patients Awards in May! This award is the first global recognition for achievements in patient engagement. Out of 92 nominations, the RIDE Council was recognized for its outstanding work in this area.
The MREPN is compiling a set of resources on MS minority research engagement and health equity. These will be available soon on the ACP website, serving as a one-stop shop for those interested in MS’s impact on these communities and their inclusion in research.
“iConquerMS and the RIDE COUNCIL have allowed me to meet many people in the U.S. that think like me and are striving to help people living with MS live better lives.” – Veronica Lewis
ACP facilitates MS research through a collaborative, people-centered approach. Anchored by three pillars – the ACP Repository, iConquerMS, and our inclusive research engagement initiatives – ACP provides researchers with vital biosamples, empowers patient-driven research, and promotes diversity in clinical studies. The ACP Repository offers open access to MS biosamples and data, accelerating breakthroughs, while iConquerMS unites patients, caregivers, and researchers to address pressing MS challenges. The RIDE Council and MREPN work to ensure that research reflects diverse populations, driving forward more equitable and effective MS care and treatment. Join our team and consider making a donation today! Together, we can push the boundaries of MS research and ensure a brighter future for all those affected.
